Day 19

Miks "kished out" on Daddy's shoulder

Well, last night was a NIGHTMARE!! We decided that Miks needs to be in her own room, because Russ and I need to have our sleep. so the last two nights have just been awful. Just like any newborn baby, Mikayla quite likes being alert at 2am... and wants to be held. And, as any mum and dad of a newborn knows, at that time the parent is pretty pooped... and sense of humour goes out the window.

I had an old friend of mine visit today, which was wonderful. Miks was quite alert today- she gets more and more wakeful by the day. And her feeding is amazing! She eats between 50 & 75 mls per feed. And tonight she actually had about 100ml... probably not ideal for her tiny little tummy, but she has these little power feeds occasionally! And I just try and go with the flow.

Miks and Mommy

I kept thinking today that she seems so normal. How is it that she can have this ENORMOUS problem with her body, that affects her ENTIRE body... every single cell.... and yet, seem pretty much normal.... I know the genetic councellor did say that we would notice it when she failed to thrive.... but Miks seems to be putting on weight. She is becoming more alert. She has had no more apneas.... infact, the only thing that gives it away are some of her physical features. But so what? We're all different anyway?! She just doesn't seem SICK? I guess that's part of what makes this all so difficult.... the only "sick" thing about her is that her breathing is sometimes quite labored, which I attribute to the high pressure on her lungs. But that could sort itself out... couldn't it?!

I just feel so helpless. I am a doer by nature. A fixer. A go-getter. A fighter. And yet there is nothing that we can do. It makes me feel so inadequate. A failure. It's a difficult pill to swallow.

Look how fat my cheeks are getting

Holding Daddy's hand (er... finger!)